Conversations With Prostate Cancer Experts

Living With Erectile Dysfunction After Prostate Cancer

Tim M. had a Gleason 9 prostate cancer removed by his urologist. He spoke with Prostatepedia about his struggles with ED posttreatment.

How did you find out you had prostate cancer?

Tim M: I had the typical issues that people talk about: urination and a PSA that was increasing a little bit. I had a phenomenal general practitioner, a doctor who really cared. He wanted me to do a biopsy. I was resistant. I said, “Oh, come on, Doc. This must be an infection or something.” Unfortunately, I resisted for about six or seven months, maybe even longer.

Finally, he said, “No, you’ve got to go for the biopsy.” So I went to a top doctor in my area. He did a check and said, “I don’t really think there’s going to be a problem, but let’s do the biopsy.” So I did it. He called and said he was surprised to say that I had aggressive cancer.

What kinds of treatment did you have?

Tim M: I really didn’t have much of a choice. My doctor said I needed surgery right away. He was a leading surgeon with a phenomenal reputation. I had the surgery two years ago.

Did the urologist talk to you before surgery about the potential for erectile dysfunction (ED) after treatment?

Tim M: Not really. He did not really touch on it. We asked him about it at one of the interviews. If we hadn’t asked him, I don’t think he would have really talked about it. I’ll never forget his answer. He said it was 50/50 whether or not I’d get ED.

What happened after the surgery?

Tim M: The surgeon completely removed the prostate. The cancer had gotten out of the capsule, but he thought he got it all because my margins were clean. I was very lucky. He was comfortable that we had it all. I didn’t have any problems with urination. The catheter clogged up one time, which was actually one of my biggest fears, believe it or not.

The catheter?

Tim M: When I was about 17, I went to see a friend who was in the hospital. He had a catheter and he explained to me what they had done to him. It left a burning impression in my mind. There’s a tube where? That kind of stuck with me. That was one of my concerns. I did have some issues with the catheter, but after that, everything was fine except for the erectile dysfunction.

Can you talk a bit about that?

Tim M: Nothing seems to really work anymore.

Have you been able to talk to your urologist about it?

Tim M: He gave me some pills—Cialis (tadalafil) and the other pills. It didn’t help. Then he said to try the injections, which seemed to help a little bit, but not really. He wanted me to increase the dose, but I really didn’t want to do that because of all the warnings: if something goes wrong, get to a hospital right away. The whole deal with the needle and the possibilities of side effects put a damper on things.

Did you talk to him about any other options?

Tim M: He went through all the options with me, including the vacuum and an implant and none of them seemed too attractive to me.

How do you feel about all that?

Tim M: Pretty bad. But you know, as you get older, you begin to accept things a little bit more. I guess you have to. I wasn’t happy about the cancer to begin with. All I can do is do what I can do.

I just turned 70 this month. I also have some cardiovascular issues. I go to the gym. I try to do what I have to do to keep conditions under control as best I can.

My doctor called me at 8:30 the night of my diagnosis and said, “I have to tell you you’ve got an aggressive cancer. It has to come out right away.” There was no light discussion. It’s not like I had a choice. If I had let it go, I would have died.

He was so focused on your cancer that he wasn’t really even thinking about potential ED?

Tim M: Yes, I believe so. That was the priority.

Did you have any problems with incontinence after the surgery?

Tim M: A little bit. I still wear pads, but I barely need them. I just got used to them.

He had suggested that I do Kegel exercises. But it’s weird. Because of my cardio situation, I wind up going to the gym and working like a fool for hours a week, but I just couldn’t get into those exercises. The pads were just too convenient, but that’s pretty much dried up at this point. The only time I have a problem is with stress if I’m exercising or something like that.

Do you have any advice for other men about to have prostate cancer treatment?

Tim M: You have to do what you have to do and deal with what you have to deal with. What you have to deal with might not be too good. There is nothing good about it in my view. My advice is to consider that ED is going to be an issue.

Do you think that more men are suffering from ED than surgeons think?

Tim M: Yes. I do absolutely think that. I’ll tell you something else. It’s a little bit sensitive to talk about, but I’ll just come out and say it. How do you define erectile dysfunction? You know what I’m saying? There are different levels of an erection. Obviously, when you are younger, it’s one way. My question is, where is the threshold? What if you end up with a three-quarter situation? My doctor told me 50% of men have ED, but of the other 50% what in the hell was the quality of what they had left?

Was the erection like what they had before or was it just enough so that they could use it?

Tim M: Yeah, just enough to use. I mean if you’re not going to be able to perform to some degree of quality, why bother?

Also, there’s a secondary problem, which is a psychological issue. When you ejaculate, there’s nothing there.

That must be a bit demoralizing.

Tim M: That was very demoralizing. Some people say, “What’s the difference?” There is a difference. It’s a mental thing. To tell you the truth, my first thought was: “Have I become like a woman? Is this an orgasm that a woman would have?” The physical aspect is not the big thing. It’s how you’re interpreting it and what’s going on inside your mind that’s the major thing.

It changes the whole experience.

Tim M: Thank God this didn’t happen when I was in my forties.

It might be worth going to see an expert in ED.

Tim M: Well, I know all the possibilities. It’s the shots. It’s the vacuum. It’s the operations.

From age 15 to 68, it was all just a natural happening. And now, you’re talking about mechanisms and devices and shots and operations and you have to push a button?

It sort of takes you out of the moment.

Tim M: It puts a whole different perspective on the deal. Men should definitely be prepared for what’s going to happen. I do think more information needs to be out there.

The more men know about what may happen the better they can prepare themselves?

Tim M: Yes. I think where doctors make a mistake, at least in everything I’ve seen and read and everything that the doctor has said to me, is that this is not a binary A or B thing. Do you have ED or don’t you? It’s not like that. It’s more like: do you have no dysfunction or do you have some? Is it the same as before or not? That’s important. My guess is that the vast majority of guys are going to say no.

One thought on “Living With Erectile Dysfunction After Prostate Cancer”

My story is very similar to Tim M. Our age, our gleason score, ED and incontinence after surgery. My cancer had also breached the borders and I had a tumor in the bed of the prostate and the doctor removed 21 lymph glands because I had cancer in the first on on one side. After two years my incontinence stopped and my erections got better but not good enough for penetration. The shots did the trick. I didn’t think I would ever be able to do the shots. I thought it would spoil the mood. I started giving myself the shot when I was by my self, away from my wife. (when I knew the time was right) I only needed 5 mg of what ever is in the shot. After two years I am up to 10 mg. My 72nd birthday is this month and I am hoping I can keep going for a while longer, still being lineament with my wife. It is exactly 7 years since my surgery and radiation treatments and my PSA is still .01